希少疾患の小児とそのきょうだいの視点

希少疾患で疾病負荷の高い小児／青年がいる家族の健康関連の生活の質と精神的健康：罹患した小児とそのきょうだいの視点

Wiegand-Grefe S, Liedtke A, Morgenstern L, Hoff A, Csengoe-Norris A, Johannsen J, Denecke J, Barkmann C, Grolle B, Daubmann A, Wegscheider K, Boettcher J.

Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings.

BMC Pediatr. 2022 Oct 14;22(1):596.

doi: 10.1186/s12887-022-03663-x.

PMID: 36229869; PMCID: PMC9563162.

https://pubmed.ncbi.nlm.nih.gov/36229869/